Sunday, April 15, 2012

Before My Head Hit The Pillow

Every now and then you get a glimpse, quite accidentally, into how 'Johanna Q Public' sees disability. Those moments are always shocking and always disturbing. That happened to me yesterday.

Vita is on a Retreat. Joe is here with me as I need personal assistance and, let's face it, everyone knows Joe anyway from seeing him around the office. He doesn't attend the retreat, obviously, but he's there for those moments in the day where I need something that I wouldn't feel comfortable asking one of my peers to help me with. When booking the retreat, it was made clear that there would be one person attending who may join us for meals but whose meals were not being paid for by the agency. It was arranged that we'd all get white meal tickets and Joe would get green ones. That way, when he used the ticket, he'd be billed for his food separately. Easy plan, well thought out.

As it happened last night, Joe told me that he'd rather not have meals with us and be the 'only non-Vita' person at a Vita event. He knows he's welcome but he didn't feel comfortable. I'm all about people learning to say 'no' and using their voice to state preferences and, though I'd have liked him to come, agreed that he should choose whatever made him more comfortable.

I arrived a little late and most people were already seated. The area isn't really suited for wheelchairs but I pulled into a table and joined two others. The staff from the restaurant came over to us and said, to me, 'So, you'll be paying for your own then?' I didn't realize at that moment the assumption and the prejudice and the 'world view of disability' behind that statement. I simply said, 'No, he's chosen not to come down and join us'. She had a list of names, she found Joe's name and crossed it off, I gave her mine and we were good to go.

We had dinner.

We chatted.

I talked too much, I'm not very good at social events.

I came back upstairs and found Joe in hotel heaven. He had classical music playing on the computer, as a soundtrack to the card game he had going. He had a beer beside him and he looked wonderfully relaxed. He chatted with me about researching the Titanic and he'd had a great time by himself - he's a nice man. I was really tired as the day had been long, I lay down.

Before my head hit the pillow - WHAM ... it struck me.

She came directly to me. No one else - me. She knew that there was someone there not part of the group, who didn't work for Vita, who was paying for himself.

And she came directly to me.

I'm fat.

I'm in a wheelchair.

I can't be employed.

I can't be a member of a group.

I had to be the person excluded because I was the person who was different.

Her assumption, naturally, that I wasn't one of the staff (let alone one of the Directors of the organization) because of my disability and my presence in the world speaks volumes. The stereotypes of those of us with disabilities run so deep that a woman feels confident that she can tell - by the sight of a wheelchair - that she can 'select out' - by the sight of a wheelchair - the person who 'doesn't belong'. The person who 'doesn't work' for the agency.

It had all happened so fast that I never understood the message behind the moment, but when I did - it scared me.

We are a waste of space.

We don't contribute.

We are obviously unemployable.

and the worst

We don't belong.

If we don't begin to powerfully challenge this strong, deep, prejudice about those of us with disabilities - I fear real danger will arise from that attitude.

17 comments:

And it's really scary. What's also scary is the thought that goes with it is that the disabled (or people in general, but especially if they're disabled) are worthless unless they are employed -- that our value as human beings and even living beings is tied to our calculated economic value.

The trouble is, this thought comes up most when I'm tired, and don't have the wits to come up with a solution.

I guess I don't jump to the same assumptions. Perhaps the list given the servers contained the description of a wheelchair - as in the person accompanying a gentleman in a wheelchair. After all, it was Joe's name on the list not yours. Although we may not want to be recognized by our wheelchair - it is a marker for others. (Like flaming red hair for the comedian Carrot Top.) If I understand what it is that Vita does and stands for - I find it hard to beieve that the staff would target you in such a way. Yet - all you need to do is ask, "What made you think it was me?" Better than than pillow rage.

Anonymous: They had no description of Joe, they just had a list of all employees attending on a grid that indicated what meals they had chosen for what evening. Beside Joe's name was a notation that he was to be billed. So, no, the woman specifically assumed that I was the person not paying. I didn't ask her the question you suggested only because it never struck me, until going to bed, that her assumption MEANT something. And, I still do think that it did.

You said you were late, all the VITA PAID meals - the people on the list, had probably already shown up, they were probably keeping their eye out for the LAST person not paid for by Vita to show up and be accounted for.If you apply just logic, not emotion, that's probably the real reason behind her comment. HER boss probably made a big deal to her about making sure the poeple NOT paid for already didn't "get a free meal". I know it's hard to do, but try to see it from a non combative state. ( I KNOW it's hard because I do this a LOT!!!)

I manage a residence for people with developmental disabilities and I have too have disabilities. I walk with canes, I'm a short guy. When I go out with the people I work with people often don't recognize me as "staff" let alone an employer of 8 other people. I'm fine with being included with the guys I assist, it's just amusing to see publics reactions at times. Who knew the crap people who receive services deal with....

It does bother me when my wife and I go out and people assume she's my worker. This is not because it's a bad thing to have one, it's that it's due to her being a philipino and they automatically put her in a subservient/menial role. Little they know that she has 3 university degrees...I guess it make them comfortable to pidgeon hole us into roles that wouldn't make them come face to face with their own unjust biases.

Just gotta say something about how i feel about the comments that question, minimise, deny, put aside Dave’s experience of discrimination, disrespect, othering. I’m glad the words ‘disagreement and heated debate are welcome’ appear under ‘leave your comment’. I’m glad there’s space for people to dissent, offer alternative interpretations, give their world view. I’m glad that there is no cult of Dave that says he’s always right and his interpretations and experiences are sacred, beyond question.But I’m not comfortable with Dave being put in a position of responding to negation of his experience when he shares these personal and intimate insights.Dave is incredibly brave. Of course I’m not saying that Dave should be protected these in any way, but i’m thinking how as a community of blog followers we can engage with this. I’m posting here as my first clumsy step.Myself, I’m thinking that people who are concerned to read this blog are commited to the same ‘causes' and I’m wary of internal conflict within movements that detract from addressing our cause. But I think there is learning in here too. I suspect that these responses are about people managing the deep insult and pain that Dave reports and we find so hard to encounter and respond to- I guess something like that is what brings some of us to the blog.But I just want to say the word ‘denial’ and think about how we deal with denial, if it is this, as it appears on the comment pages.L

If Dave were a black man writing the same blog about the same experience would people be rushing to say "Pshaw, you see racism everywhere, the fact that she came directly to you assuming that you, as the only black man present, would certainly not be working with this group of fine white people is just coincidental. It is really all in your head." Maybe it's me but I find when I try to explain to someone that as a woman with a disability I experience prejudice based on my disability, people often just don't get it.

Anon Two: They weren't checking off a list, people simply sat in the 'Vita Area' and we had to give our names to ensure that we were on the list. Joe was the only non-Vita staff who was going to be there. I was late but definately not LAST, or even close to it. I am an 'on time' person and to me the equation is 'late = 3 minutes past the agreed time'. True most were there, but by far, not all. I don't think I was combative because I didn't 'get it' or until much later, it slowly dawned on me. I spoke with Crystal (hi Crystal) who sat with me at the table and she agreed that, at the time, she thought it was odd that she came rushing up to me with the 'you need to pay' thing. I don't go looking for confrontation, this one almost slipped me by.

I do like discussion and debate because it makes me relook at things - sometimes I come away thinking 'hmmm, maybe I need to rethink'. So I like the fact that in blogs like this one there are a mixture of those like KH who say, 'yeah, this happens to me' ... those like Janet who say, 'think of it this way' those like Julia and CapriUni who admit to similar thoughts, those like anon 1 and 2 who say 'wait a minute' and those like L who want to make sure that people challenge AND support and Flemisa who suggests education as an answer. Thanks all.

Dave... you continue to open my eyes to disability disrimination. I see it all the time and make my best effore to review my own actions and behaviour. I was at an Optimist Club competition for math and public speaking/language arts today. My son was in the math competition and we were seated waiting for his turn. A family came in a sat down in front of us and their son was a young man (about 11 or 12, I think) who was in a motorized chair. He was in the public speaking cometition and as I sat there several people approached them to mention that he could access the stage from another location to do his presentation. Only one person spoke directly to him and not his parents. Most smiled at him after instructing his parents and patted him on the shoulder!I took it all in... realizing people want to be helpful and are well meaning but education is definitely still very needed. Possibly common sense also, given he obviously could speak and understand and do so quite well at that given the fact he took first place in the end! I didn't interact with this family at all but one thing I did point out to my son was what amazing rims he had on his chair tires... something else I think I notice now only because I've read your many references to your tires/wheels!

Janet, I wish I could get completely on board with your comparison, but, yeah, if Dave were a black man telling his story, I think that's exactly what people would say! No matter the minority group, I think we all get accused of being hyper-sensitive and jumping to conclusions, when we're just trying to help people understand our world a little better.

People make those kind of assumptions about me all the time. When I take my 8th graders on a field trip to the local university, the college students have mistaken me for one of the kids. I know I look a little young, but I do NOT look like I'm in 8th grade! But, I guess that's easier to believe, than that the woman in a wheelchair is the teacher and the one in charge...

I am anony #2. I stand corrected and sorry. I was sincerely HOPING that was the reason. Dave, I am so sorry............... And yes, I also realize I am today ...rightfully a NUMBER 2 ( doo doo inference meant and accepted)

Anon 2, I am actually really glad you raised concerns about my interpretation - it allowed me to clarify to readers (and to myself) facts about the situation. I think it's important to be open to discussion and not simply automatically assume that we (I) are (am) always right.

The problem I have is that whenever Dave sees something going wrong in terms of prejudice, someone comes here and tells him that he's seeing things wrong and that it was probably totally innocent. And while he may appreciate that, I find that really scary. I've said so several times before, when I see this trend. And I don't like this trend. At all. I don't like that when a disabled person sees discrimination against themselves, other people (disabled or not) rush to tell them that they're probably mistaken. That should not be the first reaction. No, we're not always right, and that's good to remember. But we're not always wrong either. And pretty consistently every time Dave points out discrimination, someone will show up to say he's wrong, or probably wrong. And there's often an implied judgement of not only Dave's perceptions, but of Dave as being morally in the wrong for perceiving such things, for ruining the image that the world is actually safe for us. And I've said this multiple times, yet it always, always happens. When I read the post, I knew someone would say this. And I really think people need to be aware that the world really can be that hostile on a basic level and it's not always necessary to go into denial-mode the moment a disabled person notices they're being discriminated against. If this happened once or twice it would be one thing, but it happens over, and over, and over, and over, and over again, and I can't not see that consistency as something fairly sinister in itself, something that causes disabled people to doubt our own perceptions of danger, which can lead us straight into danger. I think a lot of people have an interest in seeing the world as far more benign than it is, but that interest conflicts with oppressed people's need to survive and have instincts that work and that aren't questioned at every single turn.

Not sure how to say this without sounding like I'm minimizing your experience, but when you said she came and spoke directly to you, I honestly thought the story was going in a different direction - that she spoke to you, instead of over you, around you, to someone sitting with you, instead of addressing you yourself. Again, not trying to minimize, but at least she recognized that you are perfectly capable of speaking for yourself.

Amanda - I admire you defense of Dave - although, I'm not sure he needs it. It is good to challenge assumptions - when you are (unfortunately) exposed to negative comments or attitudes, you can become sensitive - to the point that you almost anticipate something negative.

It just goes to prove how each of use perceives things differently. What may be a real issue for me may be water off your back. Think of a car accident and witnesses. It is the same accident but so often the point of view is different. I admire Dave for being so open to relook and rethink. His initial interpretation may stand - but it doesn't hurt to look through someone else's eyes on occassion.

I don't feel that anyone thinks that Dave does not have a pulse on the discrimination of those with disabilities. Look at all he is teaching us.

Disability Pride

Dedication

About Me

Joe and I live in an apartment right smack dab in the center of Toronto. I have worked in the field of disability since graduating from university over 30 years ago. I became disabled a few years ago now and use a wheelchair when out in the world. For those interested, most of my books are available through www.diverse-city.com and if you are wishing to book a lecture or consultation you may do so by emailing daveandjoe@hotmail.com

Best Health Blog 2010

Requiem

There are those who have affected the course of my work and my career. I wish to remember them here:

Stella Young

Manuela Dalla Nora

Bob Clayton

Viktor Frankl

Robert Sovner

Marsha Forrest

Terry Haslam

John Money

Susan Tough

Sol Gordon

Winnifred Kempton

I believe that we should speak often and well of those who passed our way and whose lives gifted us. Here in this space I wish to memorialize those whose lived lives in service to those with disabilities.